What to do when the NHS isn't working?
Discussion
For the most part the NHS staff have been fantastic. They generally take excellent care of my son who spends a lot of time with differing teams - given that he has multiple complex needs and his care is managed across 3 different hospitals we get to see a lot of them!
However he has had vomiting issues since birth and for the last year he has had a week almost every month where he is vomiting - and it seems this is slowly increasing in frequency. The vomiting is accompanied by other illness-type symptoms such as him being less energetic, grumpier and just generally not himself. Temperature is always OK and GP confirms he doesn't have any signs of infection.
As a result of an earlier operation this is a real strain for him and after the first few vomits blood starts appearing and then gradually increases in amount and freshness. Initially we took him to hospital for all these bouts of sickness, however we now only take him in if absolutely necessary. The doctors are aware of this and are happy for us to manage at home - they only really want to see him if we feel he is dehydrated. When admitted it's usually a case of IV fluids for 24-48 hours until rehydrated then home - even if still vomiting sometimes.
The major problem for us - aside from managing a week of vomiting so regularly - is his weight gain. He has gained no significant weight in the last year - any he does put on, he loses during the vomiting illness. His development is impaired enough without this additional burden! Various specialists are concerned about his weight and lack of improvement, however their only solution is to try and stuff more milk into him.
We've had many discussions with doctors, consultants and nurses but all are drawing a blank as to the cause of the sickness, or what to do about it. A range of medications have been tried including but not limited to Ranitidine, Omeprazole, Domperidone, Levomepromazine and most recently Ondansetron. None have had any real impact and all we are being told now is to manage the effects - they appear to have given up despite my repeated questioning over what we do next. Plenty of doctors will say they are looking into it - a year on we are still none the wiser.
Does anyone have any advice on where I can go from here?
However he has had vomiting issues since birth and for the last year he has had a week almost every month where he is vomiting - and it seems this is slowly increasing in frequency. The vomiting is accompanied by other illness-type symptoms such as him being less energetic, grumpier and just generally not himself. Temperature is always OK and GP confirms he doesn't have any signs of infection.
As a result of an earlier operation this is a real strain for him and after the first few vomits blood starts appearing and then gradually increases in amount and freshness. Initially we took him to hospital for all these bouts of sickness, however we now only take him in if absolutely necessary. The doctors are aware of this and are happy for us to manage at home - they only really want to see him if we feel he is dehydrated. When admitted it's usually a case of IV fluids for 24-48 hours until rehydrated then home - even if still vomiting sometimes.
The major problem for us - aside from managing a week of vomiting so regularly - is his weight gain. He has gained no significant weight in the last year - any he does put on, he loses during the vomiting illness. His development is impaired enough without this additional burden! Various specialists are concerned about his weight and lack of improvement, however their only solution is to try and stuff more milk into him.
We've had many discussions with doctors, consultants and nurses but all are drawing a blank as to the cause of the sickness, or what to do about it. A range of medications have been tried including but not limited to Ranitidine, Omeprazole, Domperidone, Levomepromazine and most recently Ondansetron. None have had any real impact and all we are being told now is to manage the effects - they appear to have given up despite my repeated questioning over what we do next. Plenty of doctors will say they are looking into it - a year on we are still none the wiser.
Does anyone have any advice on where I can go from here?
I have no real idea about parenteral nutrition I'm afraid but wonder if he could have an allergy to something in the milk. Has he always been on the same brand of nutrition?
Could it be psychological? Just seems strange that the antiemetics aren't having any influence on it. Is he suffering from diarrhoea?
Could it be psychological? Just seems strange that the antiemetics aren't having any influence on it. Is he suffering from diarrhoea?
We've been through quite a few from varying suppliers and various products in their ranges. We're on the third milk from this particular supplier, which is Pediasure Peptide. We've commented on the possibility of this being a milk related issue a few times, hence the changes.
Psychological? Quite possible I guess, but he's continues to vomit even when he's not being fed and he doesn't seem happy about doing it either. He has no usable motor or communication skills so a diagnosis along this line might well be difficult to diagnose or to do anything about.
He doesn't have diarrhoea - in fact without aid he was only having a bowel movement once a month or so. His last milk had added fibre to aid this.
He does have a dedicated consultant paediatrician, a community paediatrician and a dedicated paediatrician for each of his varying condition categories too. Just about every paediatrician at our local hospital has looked at him repeatedly. Barium swallow confirmed fundoplication working as intended. He's been looked at by a GI specialist at the hospital who have performed his GI operations and his only suggestion was to augment the gastrostomy with a jejunostomy as he couldn't find a cause. We raised it again last week when he was having his PEG tube replaced with a button.
Psychological? Quite possible I guess, but he's continues to vomit even when he's not being fed and he doesn't seem happy about doing it either. He has no usable motor or communication skills so a diagnosis along this line might well be difficult to diagnose or to do anything about.
He doesn't have diarrhoea - in fact without aid he was only having a bowel movement once a month or so. His last milk had added fibre to aid this.
He does have a dedicated consultant paediatrician, a community paediatrician and a dedicated paediatrician for each of his varying condition categories too. Just about every paediatrician at our local hospital has looked at him repeatedly. Barium swallow confirmed fundoplication working as intended. He's been looked at by a GI specialist at the hospital who have performed his GI operations and his only suggestion was to augment the gastrostomy with a jejunostomy as he couldn't find a cause. We raised it again last week when he was having his PEG tube replaced with a button.
Has anyone recommended this book to you yet?
Long story severely curtailed: it's not all that unusual for 'us', especially little kids like M, to have puking and weight gain problems on every commercial formula tried.
For the vast, vast majority of families who've made the leap, it's turned out to be the processed formula itself causing the problems.
The answer involves a blender, proper fresh food and determination.
Swapped myself over a little while back. Nausea went away pretty much the first morning.
Long story severely curtailed: it's not all that unusual for 'us', especially little kids like M, to have puking and weight gain problems on every commercial formula tried.
For the vast, vast majority of families who've made the leap, it's turned out to be the processed formula itself causing the problems.
The answer involves a blender, proper fresh food and determination.
Swapped myself over a little while back. Nausea went away pretty much the first morning.
My brothers little girl had something very similar. Different formulas tried, still being sick. In the end she did develop a phobia about swallowing anything in fear of being sick. As your little one has the button fitted, I guess this won't be an issue here.
Sad to say, the only thing that resolved the situation was time. She grew out of it around 3 years old. But at least it did resolve.
Good luck with your little one
Sad to say, the only thing that resolved the situation was time. She grew out of it around 3 years old. But at least it did resolve.
Good luck with your little one
SBDJ, I'm not an expert but have met children who have had a procedure called "Nissen’s fundoplication" to help prevent vomiting. It is described by GOSH as follows:
"A Nissen’s fundoplication is an operation used to treat gastro-oesophageal reflux. It uses the top of the stomach to strengthen the sphincter so it is less likely to allow food, drink or acid to travel back into the foodpipe."
I wonder if any of your son's paediatric team could advise you on the suitability of this procedure for your son?
I wish you all the best in finding a solution for him.
"A Nissen’s fundoplication is an operation used to treat gastro-oesophageal reflux. It uses the top of the stomach to strengthen the sphincter so it is less likely to allow food, drink or acid to travel back into the foodpipe."
I wonder if any of your son's paediatric team could advise you on the suitability of this procedure for your son?
I wish you all the best in finding a solution for him.
LBird said:
SBDJ, I'm not an expert but have met children who have had a procedure called "Nissen’s fundoplication" to help prevent vomiting. It is described by GOSH as follows:
"A Nissen’s fundoplication is an operation used to treat gastro-oesophageal reflux. It uses the top of the stomach to strengthen the sphincter so it is less likely to allow food, drink or acid to travel back into the foodpipe."
I wonder if any of your son's paediatric team could advise you on the suitability of this procedure for your son?
I wish you all the best in finding a solution for him.
My niece was considered for this, but the doctors said they would only do it as a last resort as it can cause complications when you are older. (sometimes you really do need to vomit and this operation will prevent it)."A Nissen’s fundoplication is an operation used to treat gastro-oesophageal reflux. It uses the top of the stomach to strengthen the sphincter so it is less likely to allow food, drink or acid to travel back into the foodpipe."
I wonder if any of your son's paediatric team could advise you on the suitability of this procedure for your son?
I wish you all the best in finding a solution for him.
Thanks - he's already had a nissens fundoplication though and our hospital have confirmed it's still in place and working as intended. They say it's normal for some children to be able to vomit through the fundo.
However my son also falls under the care of GOSH for certain other medical aspects and I had a discussion with them this morning. They expressed concern at his ability to vomit through a fundo and have recommended we get a second opinion. Their initial belief is that the fundo needs redoing. We already have an appointment with their renal team soon and they have offered to refer us to their gastro team to have a look. Sadly I might need to assistance of their neuro team too due to a lack of action there
However my son also falls under the care of GOSH for certain other medical aspects and I had a discussion with them this morning. They expressed concern at his ability to vomit through a fundo and have recommended we get a second opinion. Their initial belief is that the fundo needs redoing. We already have an appointment with their renal team soon and they have offered to refer us to their gastro team to have a look. Sadly I might need to assistance of their neuro team too due to a lack of action there
My daughter is a regular visitor to GOSH due to multiple problems. I really can't recommend them highly enough, if anyone can help you it's them... And like me you're close enough for it to be a day trip. Please ask your consultants to refer you to them for consultation. And park at Euston (Melton street) to avoid the congestion charge, walk 15 minutes. Good luck!
Is your son pump or bolus fed? If the former, have you tried reducing the rate? If he's currently bolus fed, could you try a pump? Feeding into his jejunum rather than his stomach might help (this would require a different tube to be inserted = another procedure for him). Do you have access to a paediatric enteral feeding dietitian for your son? She/ he should be able to advise you. I hope you find something to help soon.
Thanks Pete. It's strange how things are spread out - GOSH do his renal care but not anything else.
LBird said:
Is your son pump or bolus fed?
Generally pump fed these days. He used to be bolus fed.LBird said:
If the former, have you tried reducing the rate?
Absolutely, we've tinkered with the rates and amounts and the dieticians have rejigged his regime repeatedly.LBird said:
Feeding into his jejunum rather than his stomach might help (this would require a different tube to be inserted = another procedure for him). Do you have access to a paediatric enteral feeding dietitian for your son? She/ he should be able to advise you. I hope you find something to help soon.
We had a discussion with his consultant about a jejunostomy (I even posted on here about it) but the consultant didn't seem keen on it, and neither have any of the other doctors it's been discussed with. We have multiple paeds dieticians - one at his school and one at our usual hospital (they work together), one at the hospital who did the operation and occasional contact with a dietician at GOSH.SBDJ said:
Nope, and that's interesting, think I'll have to pick that up.
Thanks for the input B, you'll be happy (or jealous) to know that he is now fitted with a mini one button following surgery last week
Heh. Glad to hear it, they're v nice. Met up with a young friend today with one. Thanks for the input B, you'll be happy (or jealous) to know that he is now fitted with a mini one button following surgery last week
The blended diet thing is HUGE - there's vast amounts of anecdotal evidence about (if you want to Google it, the Americans seem to tend to use 'blenderized' rather than 'blended') but also beginning to be proper studies etc that show clearly that almost always, it's the food itself causing the puking - the one child whose puking didn't improve on latest study turned out to have some kind of innardly stricture or something and indeed then didn't need tube feeding at all once it was surgically fixed. If you or your other half use Facebook, there are a (lively) international and smaller but somewhat more directly useful UK-based group on there. There's a forum or two on the general web, too. Am sure you'll find them easily enough but shout if you'd like some links.
Breakfast for me is now porridge, handful of sunflower or pumpkin seeds, a banana or pear, a dollop of yoghurt and some milk. Into the Magimix and then syringe or pump as suits. Usually have it before I wake up - get so knackered now that the extra hour or so of snooze is really really valuable.
Previously was on Fortimel - primary ingredients whey powder and vegetable oil. No wonder the bloody stuff was making me wake up queasy!
Wishing Mason feeling better soon. Before I got my PEG I spent about a year chronically dehydrated and it was utter utter pants - I just felt awful, all the time.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff